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Posted earlier about being over 25 years poz having complications and depression. Your responses helped alot. I've also read posts about survivor's guilt. Lately that has played big time in my life.

Became Poz in 1987 and lost my two best friends only in their late 20's two months prior. Lost countless friends, and even relatives. Too keep them alive in my life I try to think about them whenever I can. Think they would appreciate that too. Lately just lost my Dad which was a huge jolt.

Honestly feel like I'm coasting on meds, not much quality of life, body just won't allow alot of energy anymore. Doc's are in unknown territory with people like us, not really knowing what to do. I feel like I'm calling all the shots of my health care and I'm sick of it. Sometimes just want to give up.

Fortunately seeing a great therapist who works with chronic illness. She's helping me deal with my grief and help me stop beating myself up because I'm alive and my friends are gone. It's a hard pill to swallow. Something newbies probably can't understand.

Just keep on plugging along, and appreciate you all so much. Nothing in terms of long term support groups even where I live in a big city. Learning to live each day as it comes.

Just wanted to know I think survivor's guilt comes with being a long termer and it has been very hard for me to accept.

No, I don't think you're overreacting. My partner and I are in a similar frame of mind these days....seems as if we're just swallowing the pills, going through the motions, and "driving the bus" when it comes to our healthcare. We have to be so very proactive, to the point of almost being annoying and rude, to get any attention from our health care providers. Our system is overwhelmed, and more come every day. Us old folks who are "doing well" on the meds get shuffled to the back of the pile.

I think of my mindset more of PTSD than survivor's guilt, but that does play a part in it. I'm glad you have a good therapist. That is a big plus, and something we are totally lacking right now.

I feel like I have held in my emotions for so very long (thanks to anti-depression meds) and just functioned "on the surface" of life. We had considered trying to go and see the Quilt in DC next month (even though we can't afford it) but you know, I am afraid to. I think if I got out onto that Quilt, and actually let myself feel everything I've been repressing and keeping "at bay", I would have a total breakdown, and be non-functional. I remember how it has affected me in the past, and in DC, spread out on the Mall, it would be more than I could handle.

OK I'm rambling now, but just wanted to say I understand where you're coming from.

HUGS, Alan

Logged

"Remember my sentimental friend that a heart is not judged by how much you love, but by how much you are loved by others." - The Wizard of Oz

I have been HIV positive for almost 27 years now and yes I feel that I am just coasting on my own. My partner just retired and we moved back to Chicago, the city we are both from and where I was found positive. It is hard, I want to see old friends, but they are not here anymore. As far as docs, you are right we have to run the show. I am perhaps a little better off I am a retired/disabled doc myself, but it really does not help. You want someone to listen, and it feels as if your story has been told far too often and no one wants to listen anymore. I have finally decided it is time to think about living and not about dying. I am on antidepressants and probably will be for life and you know that's okay. Timm in Chicago

Thanks for posting. I've been experiencing a lot of these same emotions lately. I just can't seem to get over these feelings of remorse and sorrow concerning all my loved ones who have passed.

I lost so many beautiful young friends whom I think of daily. I managed to hang in there and then lost the long love of my life. I was suddenly left so utterly alone.

Wearing the badge of LTS also dictates that we have seen the horrors of this illness where hope was non existent and fear was always present.

I truly appreciate you posting this today as I have an appointment this afternoon to discuss these issues with my doctor. For the first time in my life, I can't figure out how to move forward. I've accomplished so much considering, and in spite of of this illness. But I'm just not able to achieve that level of happiness that I should be embracing.

I also don't think you are overreacting, as I share your feelings deeply. While I definitely feel "survivors guilt", I've never been able to overcome the idea of being left behind. Yes, I'm really grateful that I'm still alive, but who do I have to share that with? I think this is what haunts us all. Our contemporaries are gone, an entire segments of the gay population, simply died from AIDS and we who remain, are the supposed lucky ones.

I don't mean to sound ungrateful, but in a way I am. Had I known that surviving AIDS, would cost me what it has the last three decades, it may have altered my decision of survival at all costs. I find it a cognitive dissonance to separate my guilt over living, with my anger and hurt at living a life, so devoid of the people who comprised my world. I know only two other people from Detroit, that have survived as long as I have.

Our ASO had an annual Thanksgiving dinner that often comprised 100+ people and our agency had a membership roll of 3,000. Virtually all of those people are gone and nobody prepared me for that horror, nor can anyone help me to find relief from this yoke of grief that hangs around my neck.

I want to have dinner with other 50 something guys, but most of them are gone. I did what I could when it mattered and while I will always cherish my memories, they remain just that: memories. This is the one price of surviving that I never anticipated, because I never believed it could happen. Yet happen it did and for three decades, I've been living with a huge part of my life missing.

Joe, bob & I would be very happy to have Dinner with you somewhere during AMG D.C. 2012 (were both 55+) and anyone else who wants to...

Thanks Dennis, for the invite, but that wasn't really my point. My experience has been that there are very few gay men left, who would now be in their 50's, 60's and 70's. Without this forum, I would not know many LTS at all. We've talked about that before and it's why so many of us cherish this forum. I'm just tired of going out and everyone is younger than we are, or way older, without many in between. For so many of us, all of our peers died and living without them is sometimes unbearable.

You're reacting the way that's best for you...which is how you should...

Sometimes I use to wonder why I lived and most everyone I knew died...even ones who weren't HIV+. The hardest to deal with was losing my first partner. Not until I got on antidepressants was I able to deal with his death.

To some extent for me getting on antidepressants is when my life started again. I'm making friends now. I have a few staunch friends who stuck with me during my "crazy" time. But I'm expanding my circle...or at least being open to talking with people. No rush to make anything of it. The ones who want to will stick around and the ones who don't...well...I'm not everyones' cup of tea.

There's also the youth angle...but every generation deals with that. There's always going to be young ones coming up. I don't worry about their attitude or lack...but I'm not interested in anyone under 45 anyway, so their lack of interest just matches mine. At least in terms of sexual attraction. If they want to talk I'm happy to talk...just want it to be about something interesting.

One day I will be dead. I mourn my friends who are gone but I think they'd prefer me to go on living while I'm alive. Not real good at it...but I keep trying.

But this is my take on the subject and it just applies to me. I think you want to hear different opinions and I hope this gives something to think about...if you think it is of any use. Hope you're having a good week.

Thanks all for your posts. It sounds like we are all on the same page about this. I'm so thankful for this forum as there are no support groups out there that really address us. We're kind of on our own.

Many of you mentioned managing our own health care is all we can do even if we have to get rude with doctor's that just want to dismiss us, or don't know what to do with us. My whole life seems to revolve around this and that's wrong.

A friend of mine who is a Professor at a major research university is working on a grant studying long term survivors, what we're going through, what we're lacking in terms of medical and emotional support, and the enormous cost we, the so called "AIDS baby boomers" are going to cost the government when we really get sick. Finally someone is taking notice.

although I've wondered why I'm alive and my friends and partners aren't, I've never ascribed the situation any special meaning. I guess that's just me rebelling against my religious upbringing. God didn't keep me alive instead of them for any particular reason, you know. I'm just alive because that's how it is; and it is what it is.

When I really feel the loneliness now (besides the daily grief for my 2 lost partners) is at times hearing from my straight friends from my high school and college days, now that I moved up to Ohio after 2 decades. They have lives and children, and attachments to things, and places, and people through all the decades; while my life and friends and memories of several decades are just gone leaving a big hole - and me with a very disjointed life.

but it is life and that's better than being in the grave with the two men that I have loved. So I struggle to connect to new people, to make something of my life now by giving back, and by enjoying every day that I am still alive. I still feel (14 yrs and 4 yrs later) that I'm having to live life and enjoy it for myself and for my two partners who aren't living anymore. It's tough though trying to keep tugging my life up out of the depths of sadness and loneliness when all it wants to do is flounder and sink under.

... Our contemporaries are gone, an entire segments of the gay population, simply died from AIDS and we who remain, are the supposed lucky ones.

I don't mean to sound ungrateful, but in a way I am. Had I known that surviving AIDS, would cost me what it has the last three decades, it may have altered my decision of survival at all costs. I find it a cognitive dissonance to separate my guilt over living, with my anger and hurt at living a life, so devoid of the people who comprised my world.... I did what I could when it mattered and while I will always cherish my memories, they remain just that: memories. This is the one price of surviving that I never anticipated, because I never believed it could happen. Yet happen it did and for three decades, I've been living with a huge part of my life missing.

I know we don't often get along very well Joe; but I must say that I have never understood you more or empathized with you more than in your post here.

My experience has been that there are very few gay men left, who would now be in their 50's, 60's and 70's. Without this forum, I would not know many LTS at all. We've talked about that before and it's why so many of us cherish this forum. I'm just tired of going out and everyone is younger than we are, or way older, without many in between. For so many of us, all of our peers died and living without them is sometimes unbearable.

Joe

Most of my segment of friends would still be in their 40's as am I. We would be the babies of this exclusive club. We were only able to experience a short adulthood existence before learning we were the walking dead....lol

I know we don't often get along very well Joe; but I must say that I have never understood you more or empathized with you more than in your post here.

As difficult as this thread has been, I can't believe you started your comment to me, by stating that there is ill will between us. If there is any ill will, it rests solely with you. We had a disagreement, some three years ago and I thought we had settled our issue in an adult fashion. Apparently I was wrong. I don't know what problem you have with me, so I merely ask that you no longer reply to anything I write.

I'm pouring out my heart here and you respond in this way? Don't answer that, because I'm out of these forums for awhile. I am so angry at you for doing this to me and I don't wish to get banned.

As difficult as this thread has been, I can't believe you started your comment to me, by stating that there is ill will between us. If there is any ill will, it rests solely with you. We had a disagreement, some three years ago and I thought we had settled our issue in an adult fashion. Apparently I was wrong.

Frankly, I was just being honest that we had "ill will" between us in the past (you even seem to agree that we disagreed before and not gotten along very well); but obviously that ill will seems to still there on your side. For someone claiming that bygones were bygones, you got awfully huffy awfully fast 3 yrs later.

I guess I didn't understand you by the words of your prior post as well as I thought I did.

As a LTS myself, I would like to add, I dont have any real answer. I dont know why any of us are still here and others passed before us. I just flat dont know.Yea, we do find ourselves driving the bus (thanks I like that one) sure I will drive, just dont be a side seat driver. (doctors) We have come from, not knowing if we will make the next Dr's visit to basically paperwork snafu's. Damn what a ride. Hope to see all you guys in another 5 yrs or even 10, hell even when we are talking about 50 year aniv of diag.

Very interesting thread. I am also a long term survivor now going past 27 years. I don't necessarily have survivor's guilt. I just miss several of my family members, friends, and first long term partner who have died as I think about them every day.

The "T" is that those who have passed on where the ones I was closest to. I just wish they were around to see the wonderful things that have happened (e.g., me getting a graduate degree, buying a house, watching our children grow up and surviving this HIV over 27 years) since we talked about some of it beforehand.

« Last Edit: June 24, 2012, 04:10:53 PM by OneTampa »

Logged

"He is my oldest child. The shy and retiring one over there with the Haitian headdress serving pescaŪto frito."

Glad this is getting back on track because I think this is an important topic that we have all struggled with. Opinion not fact.... We did loose too many we loved and cared for. People that aren't part of this f'd up club, just recently acquiring this virus will never know!

I now think I don't readily agree I have survivors guilt as much as I have deep seated sadness and sorrow. I have an AIDS scrap book. I was into that before it became fashionable. I've always been the photographer and enjoyed the many delights I shared with my adorable friends.

I was starting to get consumed with going through and doing the "why us" BS. My AIDS scrapbook came together just recently as I had to go through all my others and join all my AIDS death together in their chronical story. I don't want to suddenly discover one of their Obits while looking through happy time albums.

I don't know if everyone goes through these types of situation and when, but I know reading this all has helped me immensely. To again know I have others to share similar experiences with is a great gift. Kinda proves you're not going crazy when others have it too.....

Take care and thanks all.

Wolfie who isn't utilizing spellcheck cause this took long enough.....

I thought I was going crazy, but it sounds like there's a big old mess of us who are in similar situations.

The tough thing is finding the energy to dig deep (again and again) when the world seems to think that with those (somewhat) magic pills that we are all suddenly 'post-AIDS'.

I guess to a large extent I bought into the post-AIDS mythos. Went to university, back to work, made plans for the future new relationship etc etc... Then about 3 years ago I found my health gains reversed, oops where are all those community organizations that were flourishing in my home town? Almost none of them left and some of the ones that have guaranteed funding are still dealing with models of PLWHAs that are 20 years out of date. OOPS

So I think our little take home message from this conversation is that we're having a shared set of health issues that is hard to get taken seriously.

I just turned 47, I been positive since I was 17. Got it from a blood transfusion. I have lost all my best friends, family members and all my friends from my support group, I am the last one left. My current best friend/x-partner is also positive, about 6 years for him. Our friendship is very special and we have decided to be there for each other. I do all that I can, take my meds, see my docs, eat extremely well, and do everything I think I could be doing to stay alive as long as I can and live a good quality life. I do know that I have moments where I lay in bed and think about this and you would think one would get use to it, but its still surreal for me to think I am living with this, because I just don't feel sick. I have been sick, and I know what it is like, but I still have a hard time knowing that I live with AIDS and that I may die from it? I lay in bed and cry at times and say "this is not really happening, it is all a bad dream." Maybe it is a good thing, I cry, so I don't hold it in, but this is the first time I wrote about it.... Thanks for letting me vent....

I just turned 47, I been positive since I was 17. Got it from a blood transfusion. I have lost all my best friends, family members and all my friends from my support group, I am the last one left. My current best friend/x-partner is also positive, about 6 years for him. Our friendship is very special and we have decided to be there for each other. I do all that I can, take my meds, see my docs, eat extremely well, and do everything I think I could be doing to stay alive as long as I can and live a good quality life. I do know that I have moments where I lay in bed and think about this and you would think one would get use to it, but its still surreal for me to think I am living with this, because I just don't feel sick. I have been sick, and I know what it is like, but I still have a hard time knowing that I live with AIDS and that I may die from it? I lay in bed and cry at times and say "this is not really happening, it is all a bad dream." Maybe it is a good thing, I cry, so I don't hold it in, but this is the first time I wrote about it.... Thanks for letting me vent....

Hang in there Buddamonkey. I think we all know how you feel. Do you have a good therapist? I have been in therapy ever since I found out I was HIV in 87 and it has saved me. Also support groups help. Plus we are all here for you too. You are not alone!